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Closed MRI and Claustrophobia.........

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  • #16
    Roxie,

    I have to get put to sleep for my MRI's. They do a light sedation and also general anesthesia. It's the only way I can get through them. They do have that option available. I've done one that way and am going to do another one in March that way.

    Best Wishes!

    Kara
    Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

    "One hour at a time, this was NOT my American Dream but it has to work out somehow."

    I also have some journals of my journeys, past and some present at:
    http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

    Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

    Comment


    • #17
      HI! My 'new' Rheumatologist who ordered the MRI's didn't mention the option of putting me out or anything else for that matter, nor did the center where I had them.
      I had the panic button too and almost pressed it several times! I just wanted to get through the tests......What a horrible experience! Roxie

      Double Spinal Cord Stimulator surgery 8/09
      Unsuccessful MiniArc sling surgery 12/07
      Dx'd Hypothyroid
      Dx'd Chronic Axonal Neuropathy & Myopathy
      June 2007
      Dx'd IC May 2006 (after suffering for 25+ yrs!)
      First Cysto 1979
      First Hydro 1981 (Many treatments since then!)
      Collagin"Durasphere" injections for urethra
      Gall bladder surgery Aug. 2004
      Gastric Bypass Dec. 2004
      Dx'd: Barrett's Esphogus July 2004
      Dx'd: Vaginal Atrophy 2005
      Bladder surgery 2000
      Dx'd: IBS 2000
      Hysterectomy (fibroids) 1999
      Laminectomy 1989
      Dx'd: Degerative Disk Disorder 1989

      For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
      I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

      Comment


      • #18
        Kara, did you have your Interstim removed? I thought it was dangerous to get an MRI with the interstim.

        Comment


        • #19
          They really should have give you clonazepam, or valium. or zanax to take a few hours before hand. I would even ask for something like that, even if your next MRI is in an open one.... I personally don't think that an open one is big improvement if you're clausterphobic. I remember the first time I had one in an open one, I was shocked that they classified it as "open"!!!!!!
          current meds:
          cytotec 200mcg twice daily
          toprol
          allegra

          ONLY 3 MEDICATIONS!!! YAY! Would never have dreamed this is possible

          dx: hashimoto's thyroiditis 1998
          dx: interstitial cystitis via cystoscopy with hydrodistention and biopsy 2003
          dx: endometriosis 2003
          dx: innapropriate sinus tacchicardia 2005

          meds tried but failed:
          elavil (6months)- severe tachycardia
          elmiron (1yr6mo.)- no improvement, nausea, hair loss, stomach ulcers
          a bunch of others



          Me and my best friend's baby (also my Godson!)

          Comment


          • #20
            Yes My Interstim has been removed.
            Complex Case: Severe IC 1999, Interstim 2001, Endometriosis 2001, End Stage Refractory IC 2002, Bladder Removal (Cystectomy) 2002, Gall Bladder Removal 2005, Infertility 2003, Urethra Removal, Bladder Reconstruction (Urethrectomy/Indiana Pouch) 2006, Celiac Disease 2007, Adhesion Disease 2007, Pudendal Nerve Entrapment, Ovarian Cysts, Vestibulitis, Vulvodynia, Total Vestibulectomy and removal of both Skene's Glands, 2007 and Coccydynia 2007. Fibromyalgia and, Chronic Myofascial Pain Syndrome both in my neck and knees, 2007, PNE Decompression Operation May, 2009.Multiple Chemical Sensitivities, Anesthesia Awareness (to awaken during operations)Pudendal Nerve Decompression Surgery, Revrse Uterine Sling, Sept. 2011

            "One hour at a time, this was NOT my American Dream but it has to work out somehow."

            I also have some journals of my journeys, past and some present at:
            http://karasnewblog2008.blogspot.com/ and http://icnkaralynn.blogspot.com/

            Most of my Journaling now is currently on Facebook. These are old and my ICN Patient story is very old and outdated.

            Comment


            • #21
              Open MRI'S are not always an option. If your spinal cord or brain is being imaged, you will not be able to have it done in an open MRI. Some facilities do not have the open MRI's yet. I have never been allowed to being headphones or music to my MRI appointments. Call the center you go to and ask ahead of time. If you want sedation, your doc has to order it. You will need to call your doc and ask him/her to put an order in your chart for the sedation or ask him/her to write an Rx that you can fill at a pharmacy. If you choose to be sedated, you will need someone to drive you home after the scan. If your doc will not allow you to be sedated you might want to consider some of the tricks I use to overcome the claustrophobia. The day before the scan I wear myself out by cleaning up the house or working out in the yard so that I am beyond exhausted. I go to bed late the night before the scan so that I am still sleepy in the morning. When I start the scan, I am tired and ready for a nap so I usually sleep through the scan. Don't forget to ask for earplugs if the tech doesn't offer them to you.

              Comment


              • #22
                I've now had 6 MRIs in the last 3 years due to a spinal tumor. The hospital I had most of them at was great. They needed to do a full skull and spine set, but rather than keep me in the machine that long at once they broke it into two days (I was hospitalized at that point so didn't have to worry about traveling). Sometimes I was offered headphones and sometimes I wasn't, not sure why that was.

                Before every MRI they always had a written survey that had to be completed that included questions about claustrophobia. When they call me to schedule my follow-up MRIs now they always ask during the call if I will need meds for anxiety.

                As Donna suggested you might want to let the administration know from a patient perspective what would be helpful before appointments.

                Comment


                • #23
                  Thanks ladies, these are great ideas for my next MRI. It's a brain scan so I'll call and see if it's possible to have the open MRI for that......I sure hope so otherwise I'll ask for seducation. I can't handle being inside that machine again. I get panicky now just thinking about it! Roxie

                  Double Spinal Cord Stimulator surgery 8/09
                  Unsuccessful MiniArc sling surgery 12/07
                  Dx'd Hypothyroid
                  Dx'd Chronic Axonal Neuropathy & Myopathy
                  June 2007
                  Dx'd IC May 2006 (after suffering for 25+ yrs!)
                  First Cysto 1979
                  First Hydro 1981 (Many treatments since then!)
                  Collagin"Durasphere" injections for urethra
                  Gall bladder surgery Aug. 2004
                  Gastric Bypass Dec. 2004
                  Dx'd: Barrett's Esphogus July 2004
                  Dx'd: Vaginal Atrophy 2005
                  Bladder surgery 2000
                  Dx'd: IBS 2000
                  Hysterectomy (fibroids) 1999
                  Laminectomy 1989
                  Dx'd: Degerative Disk Disorder 1989

                  For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                  I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                  Comment


                  • #24
                    Roxie...
                    Both my dad & I are VEEEEEEEERY claustrophobic...so when we go for an MRI we get slightly sedated (benadryl or something). Very helpful. There is (almost) nothing worse than being claustrophobic in that tight space...AUGH!
                    (Added by ICNMgrJill on 5/19/08. I am sad to share that Verdicries (aka Tracy) lost her life in a tragic accident just a few days ago. We will miss her support, her encouragement, her sense of humor and, of course, the joy that she found as a mother and wife).

                    Tracy ~ 29 years old with Toxoplasmosis (from birth), Fibro/CFS (since age 13...ouch), severe IC, IBS-D, severe PFD (surgery made it even worse), vulvodynia, hiatal hernia, GERD, ulcers, severe gastritis, numbness/tingling in extremeties, pelvic nerve damage--mainly urethral, urinary retention, pelvic reconstruction 7.10.07 (fixed rectocele, rectal prolapse, lifted bladder, urethra, uterus, and repaired vaginal walls), Raynaud's, 2 severely herniated discs in neck and one in low back, anemia, PCOS, anxiety/depression/panic attacks (since forever). Still having major bowel problems (inability to empty rectum...any ideas?? ).

                    I'd like to be on House, MD as a medical mystery.

                    Married to Craig, a saint amongst men...who puts up with me and my eccentricities...

                    Connor & Mommy by the tree:


                    Connor with Santa...so happy!


                    I take: LIQUID Atarax, Flomax, Soma (yet again), acidophilus, Glucosamine/Chondroitin with MSM & collagen, d-mannose. MAJOR flare from Cystoprotek! Re-trying freeze dried aloe vera w/some decent results!

                    Tried and failed: Elavil, Ultram, Prosed DS, Benadryl, Bentyl, Valium, Ativan, Zanaflex, Librax, Sanctura (all caused retention among other things), bladder instills (owwwwww!), Elmiron (allergic-throat tightening). Failed Interstim-no feeling in sacral nerves...

                    I'm allergic to penicillan, sulfa, reglan, quinolones, clindamycin, and now LATEX!

                    Comment


                    • #25
                      Years ago, I went for an eye exam. For some reason they put me in a small room while my eyes dilated. As the attendant started to close the door, I asked her to keep it open just a crack. She wasn't for doing it, but I insisted. I was still not feeling really good about it and kept counting the minutes. For those of you who are Catholic - you'll know what I mean when I said to myself that I'd say a decade of the rosary and if they didn't come by that time I was leaving. Besides being closed up - it was dark. I was not happy. I ended up saying two decades, I think. Now it sounds kind of comical, but then my hands were sweating. That's my first sign - sweaty hands.

                      Comment


                      • #26
                        HI Maggie and Verdicries,
                        I can totally relate! I'll never do a closed MRI again. My heart was racing and I was sweating at one point....it was awful!! Roxie

                        Double Spinal Cord Stimulator surgery 8/09
                        Unsuccessful MiniArc sling surgery 12/07
                        Dx'd Hypothyroid
                        Dx'd Chronic Axonal Neuropathy & Myopathy
                        June 2007
                        Dx'd IC May 2006 (after suffering for 25+ yrs!)
                        First Cysto 1979
                        First Hydro 1981 (Many treatments since then!)
                        Collagin"Durasphere" injections for urethra
                        Gall bladder surgery Aug. 2004
                        Gastric Bypass Dec. 2004
                        Dx'd: Barrett's Esphogus July 2004
                        Dx'd: Vaginal Atrophy 2005
                        Bladder surgery 2000
                        Dx'd: IBS 2000
                        Hysterectomy (fibroids) 1999
                        Laminectomy 1989
                        Dx'd: Degerative Disk Disorder 1989

                        For IC I use Elmiron, Elavil and Freeze dried Aloe Vera (it works likes Elmiron, but naturally)and Azo as needed. I also take Zegerid, Randitine for Barrett's Esophagus. (which causes me to have constant yeast infections!)I take Cymbalta for Neuopathy/Myopathy pain. I use the Climara patch for menopause symptoms. I'm on a very strict diet because of the IC, IBS and Gastric Bypass. I take Primal Defense Probiotics and whole food Iron.
                        I no longer have the awful urethral pain! I've been using MSM gel now for 4 mo. and haven't had a flare up or the urethra pain.....it's amazing stuff!!:woohoo:

                        Comment


                        • #27
                          I will have sedation !!

                          Hi Guys,

                          If I ever have to have an MRI on anything but my knee, I will prob have to do the open and have the sedation!!ha
                          thanks
                          leeshel

                          Comment


                          • #28
                            I tried 4 times w/o success to have a MRI done of my head several years ago. I ended up having to do it with IV conscious sedation.

                            I'm so claustrophobic that I can't even be in a dark room.

                            D
                            (\__/)
                            (o.O )
                            (> < ) This is Bunny. He's on his way to world domination.

                            Comment


                            • #29
                              What???

                              How do you sleep DG?? I am not that bad, gosh you do have a rough time of it!! Sorry!
                              leeshel

                              Comment


                              • #30
                                My seven year old just had to have a full spine MRI (he's fine thankfully) and he tried to do it without sedation. The children's hospital said he was on the cusp of being old enough to handle it and, "why don't we try and see."

                                Well, he was in the machine all of 10 minutes when he burst into absolute tears and fell apart with claustrophobia. Poor kiddo...they had to sedate him as he cried, "I want to go home" over and over.

                                That was definitely one of those worst mom in the world feelings!
                                mom_in_ma

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